Thursday, February 20, 2014

What Do You do When you’re Doing Pretty Well?

I’m in sort of a strange place right now.

I had my last appointment with my rheumatologist in Michigan in August, then I had my first appointment with my new rheum in November and a follow-up in January. 

As of now, I don’t have another appointment scheduled. 

I am weaning off of methylprednisolone…finally!  I’ve gone from 8 mg a day, to 6 mg for two weeks, 4 mg for two weeks, and I’m decreasing to 2 mg at the end of this week.  It’s a long process, which will be the subject of a post sometime in the next few weeks. 

I certainly continue to have aches and pains, and even swelling, especially in my knees, hips, hands, and wrists. 

I don’t think I’m in remission.  I’m on too many meds, and am not sure where I would be without them.  But from this combination of meds, my liver levels are normal for the first time in eight years.  My kidney levels continue to  border on abnormal, but hold steady enough to not be a concern at this point. 

I recently had a rash on the side of my neck and shoulders that turned out to be fungal, a minor result of an overactive immune system that is being held at bay by meds that suppress my immune system. 

This is the struggle for those of us who have these kinds of diseases.  We have immune systems that mistake our own bodies for foreign invaders and the only real remedy is to take meds that deplete that same immune system.   

So in reality, while I might be in an okay place, these illnesses are never far from my mind…or my heart…

A few weekends ago, I was commenting on the fact that I’ve been doing pretty well, and the next day, I could barely get out of bed.

Every time I get cocky, my illnesses smart me!

I know that where I’m at right now is probably not likely to be a place I will be forever.  And I hope that when I get to a difficult place, I am able to cope with it.

Trust me, I’m not complaining.

But it’s hard to know what and how to feel about this period of comparative wellness, a place that I really don’t feel I have ever been in the last seven years. 

I definitely know that I have these illnesses.  It’s a constant game of tug-of-war. 

And hopefully I’m not totally jinxing myself by writing this post.  

1 comment:

  1. OMG I feel like this........ It is so nice to know I am not alone!